Post from Sandra Sept 22nd 2018
Cholangiocarcinoma Caregivers Facebook Community
Hi everybody! I think its time for an update because I feel so many of you need some hope. More than ever. I have noticed there are fewer positive news in the last months.
So… My mom. CC stage 4 diagnosed in march 2017 and went trough surgery for complete tumor removal also affected lymph nodes were taken out. She started chemo a month after surgery. Two months after chemo ( gemz and cis ), the tumor was back. Very agressive. 50 mm / 55 mm.
Then she started immunotherapy combined with a light dose of chemo. After 3 months of Nivolumab, the tumor started to shrink. That main one, from 5cm went to 9 mm. After an year of immuno, most of the metastasis are gone. Since the 6 month of immuno all the blood tests are perfect ( just like in a healthy persons case ). My mom had a stent placed in her bileducts before she started the immuno, because her bilirubin level was 21 (extremely high). Now, the stent is gone. The tumors shrunk till the grip of the stent went away (now we wait for it to be eliminated naturally). The liver is working fine by its own.
This is such great news that every doctor is interested in her case.
From 3 months to live we are now one year and seven months. She is working and beeing active just like a perfectly normal healthy person.
Her treatment of immuno is once in 2 weeks.
And most important: her MSI marker was absent and PDL1 was very low. The book says that means that immuno wont work. Well… It works. And if a patient responds to immuno he will respond forever. There is no possible way that the body would get resistance to immuno.
I hope this news will bring you hope and a path. I remember how it was to feel out of options. I wish you all to be strong!
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